My invisible illness was so painful I gave myself black eyes just so people would notice
WHEN Lara Bloom got a black eye from a scuffle at school, she was dumbfounded with the pouring of sympathy she received.
The pain was barely noticeable compared to that she experienced every day due to having an invisible illness.
The then 16-year-old had been crippled by the symptoms of Ehlers Danlos Syndrome for five years.
But she was yet to be diagnosed, silently suffering from the condition’s constant challenges.
Throughout secondary school, she fractured her wrist dozens of times and was always hobbling around school on crutches or in plaster casts.
But it was the “invisible” physical pain that was the worst, including breathlessness and fatigue, and confusion about what was wrong.
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Baffled doctors described her as simply “accident prone”.
Teachers and school kids thought of her as the “class clown”.
So when Lara got more sympathy from a black eye than she had her whole life, the confused teenager was pushed to do “the unthinkable”.
The now 42-year-old, from Bushy, Hertfordshire, told The Sun: “I got a black eye and everyone was saying, ‘Are you okay? Is there anything I can do? This must be terrible for you’.
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“I was thinking ‘I can’t even feel it, this is nothing compared to the pain I feel every day’. I was really frustrated.
“I wanted people to believe and understand me, so I did the unthinkable.
“I ended up beating myself up because I wanted to recreate a moment where people could finally see the pain I was in.
“As predicted, everyone thought it was terrible. I woke up in an ambulance.
“I was in a children's ward and they told them I had been in a car accident, that’s how bad it was.”
Years of medical neglect
Lara’s “cry for help” came after years of feeling medically neglected.
She had been showing the symptoms of a rare condition that was barely recognised in the nineties.
Even now, two decades later, Lara is still astounded at the “unforgivable” lack of awareness among medics about EDS.
EDS can make the connective tissue of the body - such as tendons, ligaments, blood vessels and the skin - weaker or more stretchy.
Because connective tissue supports everything from the bones, tendons, blood vessels and digestive system, symptoms can be widespread across multiple areas of the body.
I’d open a jar of mayo and my wrist would break
Lara
They can include joints that dislocate easily, skin that can bruise easily, tissue weakness and slow wound healing.
In the rarer types there can also be organ and vessel rupture and premature death.
Some of the more hidden problems endured by those with the condition include gut issues, low blood pressure and fast heart rate, bladder complications, extreme fatigue, and widespread pain across the whole body.
Lara said: “I fractured my wrists multiple times. I’d open a jar of mayo and my wrist would break.
“It wasn’t because I had weak bones, but because all the ligaments, tendons and tissues around them were very weak.
“Of course, I didn't know that at the time. I thought it was incredibly unlucky.
“Even physically walking down the halls of school, carrying books and bags, it would hurt my body and there'd be no reason for it.
“My right leg rotates 40 degrees - I should have had surgery to fix it when I was a child.
“It was hard on my parents. They desperately wanted to believe me, but when doctor after doctor was saying I was fine, they started questioning it as well.
“People told me I was accident prone, or my parents were being looked at to see if there was some kind of abuse.”
As Lara has grown up, she has also developed a disorder whereby her jaw fully dislocates every day, making eating and talking challenging.
“I've got problems with my bowel, just motility and general tissue instability all over my body,” she said.
“EDS is so sporadic - you can be great and strong one day and then the next day, you can’t even lift your head.
“People don't understand, even those you see daily.
“This is my normal so I don't know what it's like to not have these feelings and experiences.
“I'm sure if I woke up one day and had no pain whatsoever, that would feel really odd to me.”
Lara eventually got a diagnosis at the age of 24 when, struggling to put weight on, she saw a dietitian who connected the dots.
By this point, Lara had completely shut down to the outside world.
Speaking of the day she beat herself up, Lara said: “I was disgusted with myself for doing that.
“I closed down big time emotionally and just became invisible.
“It's the first and last time I ever harmed myself in any way like that.
“I feel like a completely different person to who I was then, and wish I could give my 16-year-old self a big hug.”
Lara is President and CEO ofand a representative campaign, which tells the stories of people living with rare diseases, or caring for someone who does.
She said: “One in 17 people are living with these rare diseases like me - this is 3.5 million people in the UK.
“I am representing all the 14 types of EDS and hypermobility spectrum disorders, and that is what I try to do every day.
“I have the privilege and sometimes the heartbreak of hearing the most horrific stories.
“A mother called me two years ago and her 13-year-old daughter had been waiting for a diagnosis for years and ended up in a mental institution instead.
“Finally, she got her diagnosis. [But] that whole journey, it had destroyed her so much that she ended up at 13 years, committing suicide.
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“That there's such medical negligence and such bad awareness, it's just unforgivable.
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“I could have taken that other road because I got to the point where I was able to do that to myself.
“That’s why I do my job.”
